1. Stigma experiences, effects and coping among individuals affected by Buruli ulcer and yaws in Ghana.
- Author
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Tuwor, Ruth Dede, Mtuy, Tara B., Amoako, Yaw Ampem, Owusu, Lucy, Oppong, Michael Ntiamoah, Agbanyo, Abigail, Agbavor, Bernadette, Marks, Michael, Walker, Stephen L., Yeboah-Manu, Dorothy, Pullan, Rachel L., Dapaah, Jonathan Mensah, Phillips, Richard Odame, and Palmer, Jennifer
- Subjects
BURULI ulcer ,SOCIAL stigma ,SOCIAL acceptance ,NEGLECTED diseases ,ATTITUDES toward illness ,DISEASE management - Abstract
Background: Stigma related to skin neglected tropical diseases like Buruli ulcer (BU) and yaws has remained underexplored and existing studies are limited to individual diseases despite the WHO call for integration in disease management. Within two districts in central Ghana, we explored stigma associated with BU and yaws to understand overlaps and disease-specific nuances to help guide integrated interventions. Methodology/Principal findings: In-depth interviews were conducted with 31 current or formerly affected individuals to assess the experiences, effects and coping strategies adopted to manage disease related stigma. Data were analysed along broad themes based on the sociological construct of macro and micro interaction and Goffman's treatise on stigma. Disapproving community labels fueled by misconceptions were noted among BU participants which contributed to macro stigma experiences, including exclusion, discrimination and avoidance. In contrast, a high level of social acceptance was reported among yaws participants although some micro-level stigma (anticipated, felt and self-stigma) were noted by individuals with both diseases. While younger participants experienced name-calling and use of derogatory words to address affected body parts, older participants and caregivers discussed the pain of public staring. Stigma experiences had negative consequences on psychosocial well-being, schooling, and social relations, particularly for BU affected people. Problem-focused strategies including confrontation, selective disclosure and concealment as well as emotion-focused strategies (religious coping and self-isolation) were noted. Conclusions and significance: The types and levels of stigma varied for BU and yaws. Stigma experiences also differed for adults and children in this setting and these differences should be accounted for in integrated interventions for these skin NTDs. School health programs need to prioritize educating school teachers about skin NTDs and the negative impact of stigma on the wellbeing of children. Author summary: Stigma related to Neglected Tropical Diseases (NTDs) constitutes a burden on the social and economic life of affected people, their caregivers and communities. Current evidence on stigma has been limited to a small number of NTDs. The WHO recommends integration approaches to NTDs are therefore understanding stigma and its differential impact is important. We explored stigma experiences, effects and coping strategies simultaneously in BU and yaws in two districts in central Ghana. Findings showed nuances for macro-level stigma associated with BU; individuals were stigmatized by community members; interestingly, this was not noted for yaws. Negative effects of stigma found included psychosocial burden, effects on academic work and straining of social relationships. Some affected individuals dealt with the source of stigma actively avoiding disclosure, selective disclosure, concealment with clothing and confrontation. Emotion-focused strategies such as religious coping and self-isolation were reported; these were noted to aggravate psychosocial problems being experienced by affected people. We propose that, the differences in stigma among people affected by BU and yaws, and the role of age in determining types of stigma identified in this study should be considered in integrated interventions for skin NTDs. School health programs are encouraged to educate teachers about skin NTDs and the negative effects of stigma on students. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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